Sunshine, Lollipops and Cancer

I’ve always wanted my posts here to come across as informational, but also as a creative expression of my optimism.  So those times that I don’t feel very creative, or optimistic, or either, I avoid writing.  But then people miss out on the information and perhaps that’s a bit unfair.  If you don’t know how I am, you have no choice in how to respond to me.  So I’ll write to at least be informational.

The chemo I started back in June didn’t work very well.  Granted, I did hike the Sierra’s with the family, and it kicked me pretty hard, but I did it!  So the doc recommended Radiation in September.  Through all that time, my right lung was developing a pleural effusion (liquid in the lining around the lung *not In, just Around* is produced more rapidly than it can be removed by the body, it compresses the lung and makes it hard to breathe) so doc recommended a surgery after radiation that would prevent that problem.  Radiation was really tough, but worth it.  The surgery was really really tough and not very worth it.  I still get the fluid buildup and now it’s on the left lung a bit as well as the right.

Also through all this time I made the decision to switch from Kaiser to UCSD so that’s my big challenge right now and I’m doing what I can (with the help of some great people like Cathy G and Cathy S) to make the switch smoothly.

Work has definitely taken a back seat.  Thanks to my angel from above, John Ray, I have been able to refocus my energy and efforts on my health and not worry about school at all. I will be out most days of the rest of this semester and have admin working on a schedule that will only give me 4 classes next semester instead of 5.  Although I’m not even really thinking about semester 2 at all until I get set up at UCSD.

Days of late have been spent moving really slowly, trying to get food into my belly, and talking less since it makes me lose my breath.  Family and friends have been helping tremendously with visits that get me outside (gosh our backyard just keeps getting better and better), dinner deliveries that allow Morgan and I to spend some quality time together, chauffeur duties that let me stay on my pain meds, chemo visits that keep me in good company, and in general lots of love, patience and understanding.

So thanks to those that have been in the know and have been helping out.  I hope this updates those of you who maybe didn’t know how things were, and I hope it helps us stay closer, because really it’s the love and concern I get from you that helps with the creativity and optimism

Sorry for that last post… I think just writing it depressed me more.  But I’m back to being me again.  A little sore from exercise, and in good spirits:  that’s a pretty great combo for me.  

Just recently, Patti and Charles invited me to join them on a ‘training hike’ in prep for our 4 day hike through the eastern Sierras at the end of the month.  I hadn’t been up Cowle’s  Mountain in… um… a year?  Let’s just say forever.  But if I was going to tackle the Sierras for 4 days, I’d better be able to handle a morning hour or two up and down Cowle’s.  So off we went.  One steep climb from the top, Patti commented on her 20 lb pack starting to seem heavy.  “I’ll take it” I heard myself say, shortly followed by “Wow, my calves feel the hill so much more with the weight on.”  We reached summit, and took a water break.  I squatted down to give the dogs a bowl of water and pressed to get up, thinking, “Wow, my quads really feel that with the extra 20 lbs.”  On the way down, Charles and I commiserated over bad knees, but secretly I felt a bit stronger having the age and surgery advantage.  I be-bopped down the hill silently telling myself “Wow, my knees do actually feel a bit tired.”  And like I said at the start of the post, I’m still a bit sore.  Three days later.

Medically, I’m still looking into other options but am currently acting along with the plan of my oncologist… try a new drug.  It’s an antibody (like the Herceptin), as opposed to an actual chemo drug so the side effects shouldn’t be terrible.  Hair and nails and skin should all be unaffected, energy should even be pretty good.

A visit from Modus and a breakfast with Dechard and Davis reminded me that life is good, being happy is way better than being stressed, and friendship bracelets are still cool.

Now I’m going to go work in the back yard

The vinorelbine they were giving via a PICC line didn’t really help.  Some parts stayed as they were, some parts got worse.  Oddly enough I argued to get the PICC line removed so that I could go hiking in the Sierras.  Catching the line while putting on or taking off a backpack sounded risky, and more importantly, I wanted to be able to jump into the glacial lakes at the spots we’d be hiking to.  An appointment this week will let me know what my Kaiser oncologist recommends as a next step.

Looking into other options, I just returned from Houston.  Many who heard I was going asked “MD Anderson?” but no… Burzynski.  A renegade who might have found a great way to fight cancer, but who is not well-known, not well-represented on the internet, and not well supported by the government because, well, because the government cares too much about money and power?  Maybe.  Please… anybody who has friends in other countries… do some research and tell me what you find, because this Dr B guy is offering something elsewhere that the US will not allow.

Here’s what I do know about what he offers:  a drug involving things called antineoplastons that he claims fight cancer cells.  That get people to go from their own doctors line of “Get your affairs in order” to being cancer free.  But people like me don’t have enough so the cancer just gets worse.  He’ll treat me with these antineoplastons if I join his trial and pay lots of money and promise to only get treatment from him.  Sounds odd, I know, but can you imagine the challenge of deciding if it’s worth it?

He could make my cancer go away.

Or he could just make loads of cash go away.

While mulling his option over, I’m also looking into places like UCSD Moore’s Cancer Institute who treat people based on a test of their individual genetic make up and look for specific genes that have been mutated by the cancer.  That’s a treatment that Burzynski also follows, but that Kaiser doesn’t.  Maybe that’s all I really need, is some treatment plan made specifically for me.  And if I go that route, maybe I can get insurance to cover it if I switch from Kaiser to a PPO in November.

Geez, I feel like I’m being asked to make a huge decision and I hardly have any info at all.  So I’ll think, I’ll share with you, I’ll take suggestions, I’ll find peace intermittently in my backyard that is becoming my new haven (thanks to what my sister has started), and eventually I’ll feel like I’ve made a decision and can move forward.  For now, I’m sort of in limbo.

Guess I should go mix a fancy drink and play me some Chubby Checkers.

Philosophy:  Gravity pulls us down.  Mother Earth and all her glorious mass have created this force field that we can only escape via NASA.  Well, I tried that once and they denied me.  So physically, we’re stuck.

What I would love to see us unstick from is the pressure to look a certain way.  I suppose I’m preaching to the choir.  None of my friends are overly concerned with physical beauty (that’s part of why I love you all).  But consider two things recently on my mind:

1. My mom was not a beauty-focused parent.  Yet I still have clear childhood memories of feeling inadequate because of what was seen on the outside.  I didn’t shave enough of my leg, I laughed too loud, I smiled too big, I was too tall, and much to my current frustration, my boobs weren’t big enough.  Good parenting is not enough.  Involve yourself in the positive growth of all the kids you encounter.  Even the random kids you pass at the zoo or the mall.

2. Marcela shared a recent study with me.  You can find it at:   (http://www.youtube.com/watch?v=NWv1VdDeoRY)  Older elementary level students were praised for either working hard or being smart.  Kids praised for effort chose bigger challenges than those praised for intelligence.  They also had more fun and less frustration with a challenge than the others.  Acknowledge kids you encounter for what really matters:  their actions (‘you made a creative decision’ or ‘you acted with maturity’), not things that are out of their control (‘you’re pretty’ or ‘you’re smart’).

The recent snafu by SELF magazine (http://www.nbcsandiego.com/news/local/SELF-Magazine-Apology-Cancer-Survivor-Tutu-Photo-Monika-Allen-252713311.html) reminds me of a girl I saw riding a bike with her dad at Lake Murray.  She was wearing a tutu and I commented on it.  Hopefully she heard “What a great outfit you picked for a sunny day bike ride” and not just “Cute tutu.”  It’s a war of semantics, but words are powerful and we may as well choose the ones that make the most positive impact possible

Medical update:  the Dec PET showed that the Xeloda/Tykerb regimen was working, but it was really rough on my hands and feet.  To the point that I requested a handicap placard and a wheelchair because walking hurt that bad.  Hands were just as bad.  I wore sweats and flip-flops not just for comfort, but because zippers and shoestrings were too painful to deal with.  So my doc had me take some pretty long breaks and while my extremities started feeling better, my cancer also started to take over.  It’s now in my other breast (damn boobs-  should have gotten rid of you when I had the chance), and the lining of my lung (it’s not IN my lung though).  I’ll be starting a new chemo Monday.  It’s an intravenous but my veins are pretty tapped so I had a picc line put in.  Crazy to have this thing sticking out of me, but at least I get to skip the needle pokes for all my blood tests and treatments.  I asked what the side effects would be and he said “Fatigue and some neuropathy.”  I laughed off the fatigue (SuperRoo) and figure numb digits will be easier to deal with than painful digits.

Feel Good story:  Growing up, I had a neighbor whom I became close to.  She was a young newlywed and soon to be a mom.  I remember sitting in Julie’s kitchen and telling her how much I loved her home and furnishings and that I wanted to buy it all for myself when I got older.  A price somewhere in the hundreds of dollars was discussed.  I remember considering the pet lion I would have and what I would feed it.  I also remember that she never threw reality at me, just asked about the details (what would I name my pet lion?).  I now catch myself sometimes with young kids and feel the need to share reality with them, but instead of quashing creativity, I try to nurture it.  I know I dream of leaving a legacy behind and that I love knowing what lessons I’ve left others with and I felt the need to share with her the lesson she had taught me.  So I contacted her and a few emails later, we had a really wonderful 4 hour visit.  She didn’t even remember the conversations about the  house and the pet lion, but she was touched to hear about her impact on me.  Like one of the signs in her garden… sow seeds of love.

I suppose there was a point where I wondered if I would see this day.  Then suddenly it was here.  Fear and worry are useless unless (wow, thought I made a typo there for a moment) they motivate us to do better.  So no more fear and no more worry, just living life the best I can.

Heard girl sing a song the other day, “If I were smart I wouldn’t have a heart.”  That’s actually really dumb.  Of course having a heart means it hurts, but that’s the small sacrifice we make so that we can also feel all the good.  Duh.

I asked my students the other day, “Why do we all wait for the new year to make resolutions and try to be better?”  Someone pointed out, “Yeah, we could do it on any day, or at any moment actually.”  My heart got happy.  Then someone else said “That’s too much work, though.”  Heart sad.  But at least they were thinking about it.  Heart happy.

Shayne asked me the other day, “What was the worst and the best part of 2013 for you?”  Kneejerk answer:  “Cancer, Cancun.”  Real answer: “There are no extremes.  They are too limiting.  Cancer (and my brain,heart,soul,friends) gave me a more positive outlook, gave me friends like Suzette and Shayne, improved friendships with people like Kramer and Petty, inspired visits with Miguel and my nieces, opened my checkbook for things that make me really happy.  Yes, money can buy *some amount of happiness.  Cancun, my car, baseball tickets, really nice dinners…  everything except the Uggs was totally worth the price.

Speaking of spending, Modus’ mom Alice reminded me:  only spend money on things that are either useful or beautiful  Preferably both.

I told Morgan:  the backyard really needs to be completed soon.  Outside is my happy place.  Sure the bed is super comfy, and the couch is a great place to cuddle with the pets, but my fave inside spot is the one where I can look outside and see the birds playing in the birdbath.   That’s were I want to BE, not look at.  (outside, not necessarily IN the birdbath)

Medical update:  the scan last month showed improvement.  Fewer hotspots that were less hot.  And I actually saw the scan results.  So cool.  Images from all three axis that you can scroll through to see cross sections anywhere.  From the top saw the the shift from bone to brain.  From the side, saw good curvature in my spine.  From the front, saw my heart and lungs, (and the earrings that I never take out).  Saw the cancer too.  I get injected with radioactive dye that attaches to glucose, water and ammonia.  That’s why I can’t eat for 12 hours prior and have to pee right before.  Cancer cells react to the tracer-laced glucose different than normal tissue.  These cells then ‘light up’ as bright ‘hotspots’ on the scan.  So less spots and less brightness was really good to see.

Cheers to 2014… make it as great as you can.  Love to you all.  Thanks for all your words of encouragement

I’ve made a connection with a woman who told me she was diagnosed with stage 4 breast cancer…14 years ago.  When people ask her how things are going, her reply has something to do about being glad to be on this side of the grass.  I think her point was that she’s above ground, not below, but I read more into it.  We always hear stories (and live them at times) about the grass being greener on the other side.  I’d like to announce that I AM on the greener side

The bummer news… side effects suck.  This is the part were I complain.  A bunch.  But still try to be funny.  Fingernails are again separating from the nail base.  It hurts and it looks gross.  Worst of all, they stink.  Whenever I pet Zoe or the dogs, they sort of pull their heads back a bit and sniff at them and I feel oddly self-conscious for a moment.  At least it’s only them noticing.  Finger tips are swollen and really sensitive to the touch.  Makes doing pretty much anything with my hands hurt.  typing or pushing on a flat surface isn’t bad, but picking things up is difficult (especially small things like pencils and utensils), and small amounts of friction (like when you rub your face to rinse it) hurt.  It’s ridiculous how many things do:  turning door handles, or the keys in them, using a fork, holding a toothbrush, tying shoes, zipping and buttoning clothes, wiping my face with a towel… and picking my nose is impossible.  Sometimes the entire palm is sensitive, as can be the soles of my feet.  That sort of makes walking hurt but if I wear slippers and shuffle around like an old lady, it’s not too bad.  Of course it makes dressing up to go out pretty silly.  I actually wore socks and Birkenstocks for a few days.  And my lips get blistery which is really unattractive, but the worst of that is that eating and drinking are painful.  So is talking, but somehow I manage to keep doing that.  There’s also this ridiculous itchiness that takes over my whole body.  Of course scratching is out of the question.. I hardly have any fingernails, and curling my fingers hurts too much anyway.  So I get by… Morgan leaves the toothpaste cap really loose, my students uncap my pens, I wear sweats, take lots of Tylenol extra strength and I use lots of creamy lotions as much as I can.

The good things that are happening…  This is my bragging part.  My wonderful girlfriend Melissa convinced me to finally spend a week in Cancun, Morgan found me an awesome new car, Heather and Scott took me sailing, some professional crew of girls now cleans the house for me, Shayne provided an amazing day of pampering that included a super sexy outfit, Miguel inspires me to eat out at really good restaurants and purchase things that make me happy (even if they are really expensive), the La Jolla Village Garden Club was touched by my wish to donate trees to school and offered to do the donation themselves, I go on dates with my Dad and his 82 yr old buddy Tony to do things like listen to opera and tour the new central library, and in general, I stress less and enjoy more.  So life is being lived.  And isn’t that the whole point anyway?

As for a medical update:  I saw the oncologist yesterday.  We both see what looks like progress.  I’ll schedule a PET scan for this month to verify.  I don’t know how much the current drugs can make my cancer go away, but if they keep it from getting worse, I’ll be happy with that.  Really happy.  The side effects suck, but I’d rather be living with them than not living.

So Happy Thanksgiving, thanks again for those of you that send me messages of love and support and for those of you that are close, for spending time with me.  I really do owe much of my positivity to you.

(ps…  I know not all of you Facebook, but most of you do and that’s where you can see some awesome photos of my adventures)

I just swallowed 5 really big pills.  They were a really pretty orange color that almost made me like them, sort of like the tip of an orange Mr Sketch marker when it’s still brand new, except without the scented part.  I figured that with so many of them, I would start with just two.  I popped, I swallowed, and while I looked at the others and contemplated taking them all together, one of the first made an almost imperceptible knot in my throat.  Nothing too choke on, but enough to scare me into splitting up the last three.  Not worth the risk of gagging on my new $5000 prescription.

I have another one, it’s only about $3000.  It’s supposed to go down as 3 pills in the morning and 4 in the evening.  I’m not even sure yet how big those are.  I just hope they fight my cancer better than the so called “godzilla.”  That one was a wimp.

I never really wanted to call it “my” cancer.  But I met a girl the other night whose MS has put her in a wheelchair.  She likes to think that she signed up for it, that someone out there said “Who’s up for this?” and she responded, “May as well be me…  I can handle it.” I don’t think I ever thought that way before.  I sort of figured everybody has some crap they have to deal with, and this is mine, but I never really thought about it as a choice.  What if it was?  What if we all saw the list of crap and could actually choose to take something on, or pass it to someone else, never knowing who was next in line?  What would you choose?

Godzilla certainly didn’t choose me, but maybe that’s not a problem.  Maybe this new mix of drugs (Tykerb and Xoloda if you’re asking) will.  Cathy, my close neighbor/friend, pointed out:  Godzilla was issued to me first because it was the drug that worked on the highest percent of people, but I’m not in that category.  I’m the outlier.  The rare case.  So what works for me probably isn’t going to be what works for the majority.  Makes perfect sense.  I just hope that what does work gets figured out soon.  While I’ll get to discover the side effects of the new drugs over the next few weeks, the effects of the actual cancer, I am already way too familiar with and they are driving me crazy.  Apparently inflammatory breast cancer is known as it is because of the irritation of the skin.  It’s bumpy and red and swollen and achey and serves as a constant visual and physical reminder that I’m infected.  My doctor says radiation might reduce the symptoms, but that it would only be temporary, and I can’t do chemo while I’m doing radiation.  Surgery is not an option because they fear too high a risk of infection or too low a chance of healing.  Hmmm…  chances, stats and risks.  I’ve been tempted to check them myself… can’t I just cut out a section and put a bandaid over it?

I suppose there’s a lot of ambiguity when we tell others how we are.  What I deem as the line between ‘good’ and ‘not so good’ might very well be considered well below someone else’s ‘shitty.’   My first thought is that I ought to not associate with those people. I want to surround myself with fighters and survivors.  But a bit more thought makes me realize that it doesn’t really matter how our adjectives compare.  All that matters to my dearest friends when they ask ‘how are you’ is that I can be honest with them and that I can let them help me feel better if they choose.   And that is part of why they are my dearest friends.

So to Cathy, thank you for checking in on me today.  Modus, thanks for the love and for the Agnes picture.  Her belief in unicorns is like an eternal hope for magic and beauty.

Physically, I feel like I did yesterday.  Had I not been aware of being given drugs today, I’d have no physical indicator aside from the small hole in my vein.  I didn’t take steroids before the treatment, so don’t expect a big change like I used to get after I stopped them.  One nurse doesn’t even consider my new ‘godzilla’ drug a chemo drug.  It’s a treatment like Herceptin ( a drug I took for 6 months after my surgery last year, doesn’t attack all fast growing cells, just attacks cancer cells and tries -(failed, dammit)- to prevent a recurrence, no ‘chemo’ side effects at all).  In fact it IS Herceptin, just laced with chemo.  So the idea is that it attacks only the cancer cells, but does so with the vigor of an actual chemo drug.

Mentally, emotionally, I’m fine.  Morgan and I are both trying (and succeeding) and spending a little more time together, stressing less about small things, and enjoying each other just a bit more than before.  I’m excited to go back to school, I’m excited to be making progress fixing up the house, and I’m loving the weather

Speaking of which… it’s almost sunset time, gotta go!

(get it Deb?  just for you!)

And I got it.  Some new drug just approved this year shows promise for treating metastatic breast cancer (Kadcyla if you’re wondering… sounds like Godzilla, right?  Attack!!).  It’s tolerated better than what I’ve been on, so I shouldn’t (knock on wood) have as much nausea or fatigue as the last treatment.  I might even get some hair and fingernail strength back.

I start this Wednesday and will go back every 3 weeks.  Each treatment is preceded by a physical exam to assess the drug’s effects and after about 4 treatments I’ll likely get a scan to see the progress.  So… updates later.

As for regular news…  I’ve been enjoying my last weeks of summer (only one left!!) with drive in double features where alcohol and Pixar movies leads to loud singing of Boys to Men songs, Marcela time that makes me beautiful, and trips to the ranch where the quiet of the world is only interrupted by the panting of really tired/happy dogs.  Thanks to FrankNShayne for undying support (pun intended) and to all of you who send me love comments on my posts.  Smiles make me stronger and you all make me smile

Lily is the intelligent 7 yr old who loves to help me grade physics papers.  She’s the eldest of the three kids we love to live next door to.  The other day she was over and asked for an Otter Pop.  It’s a common treat for the kids when they do something above and beyond, only this was a day she hadn’t.  So Morgan said “No.”  “But I want one,” she whined.  “Want in one hand, poop in the other, …”  then he stopped before finishing, in his effort to not be so cynical with the kids.

Well, we’ve all been wishing for good news, but the annoying reality is that sometimes life just seems really unfair.  The stupid cancer in my right side has spread to my left side.

I still have questions that I’ll ask at the appointment this Friday.  I couldn’t get to them all while sitting in the Target parking structure hearing my doctor share the biopsy results with me.  He did mention that I’ll likely start doing a 1x/3weeks chemo again next week.  And when I know more after Friday’s appt., I’ll share.

In the meantime, my outlook is still positive.  Chemo is annoying, but so are lots of things in life.  I can handle this.  There’s still a good chance I’ll die old (old, as in *way past where I am now).  And before I do, I’ll be sure to live well.  Like tonight…  Morgan and I are taking the dogs for a sunset walk around the lake.

For the tons of fun these past few days, I owe thanks to Darcy and Tamara (family pool parties rule!), Cathy and Jen & Deb (girlfriend dates that were past due), Scott and Heather (beer and ka-boom…  what a mix),  and to all of you who sent me encouragement to help me get through the waiting.